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Topic: Bone Mets Thread

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Posted on: Jun 22, 2012 04:09AM - edited Oct 28, 2021 03:22PM by Moderators

Jac53 wrote:

I've started this thread after suggestions that it would be useful.

Mod Note: We have removed the original link as it is no longer viable. At one of our member's' recommendation we are offering this link as a resource for you.

https://youtu.be/YpFfLrITfEI


Jeannie. "You only live once, but if you do it right, once is enough." Dx 6/19/1995, 10/15 nodes Dx 2/18/2011, Stage IV, mets, ER+/PR+, HER2- Dx 7/2/2012, Stage IV, mets, ER+/PR+, HER2-
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Jun 2, 2021 07:59PM illimae wrote:

I used to have a bone scan every 12 months while I was stable after my initial chemo but now have it every 3 months as part of my EXTEND trial protocol.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Jun 2, 2021 08:10PM Sadiesservant wrote:

I’ve had several bone scans, more or less once a year. Having said that, bone scans seem useless for me. I am now used to reading “significantly underestimates the burden of disease in this individual”.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine) Chemotherapy 10/8/2021 Navelbine (vinorelbine) Chemotherapy 1/7/2022 Halaven (eribulin)
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Jun 2, 2021 08:38PM - edited Jun 2, 2021 08:39PM by DivineMrsM

Sadie, what does “significantly underestimates the burden of disease in this individual" mean?



found lump 12-22-10—ilc—er+/pr+/her2—stage iv bone mets—chemo~lumpectomy~radiation~arimidex—March 2019-ibrance/aromasin* —Sept 2019-verzenio* —March 2020-xeloda*
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Jun 2, 2021 09:04PM Sadiesservant wrote:

Ha! It means that the bone scan shows sweet bean all but when I have a CT? Holy moly! Mets everywhere. I think the issue is that with my slower growing disease, it doesn’t take up the radioactive marker to the same extent as a “hot” cancer.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine) Chemotherapy 10/8/2021 Navelbine (vinorelbine) Chemotherapy 1/7/2022 Halaven (eribulin)
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Jun 5, 2021 03:59AM - edited Jun 5, 2021 04:01AM by Hamer1l

Hi everyone

I have only joined this forum a couple of weeks ago, I have posted on a couple of other threads but thought I would fire some questions to get some advice.

I have extensive bone mets, mainly in spine, ribs and left femur. Prior to my diagnosis in March I had severe back pain for 6-7weeks which at the time I thought was a slipped disc!

It turns out the cancer had weakened my spine and I had 4 compression fractures on the vertebra. I believe they are healing but my oncologist doesn't really mention them.

When I came home from hospital in March I was using a zimmer frame as my walking was affected. I am now walking without the zimmer but I am a little hunched! I'm hoping this will improve with time and treatment.

In terms of painkillers I am on zomorph, baclofen and Paracetamol. I take these morning and evening.

Throughout the day I am not in any pain and can move around etc but I do have soreness and aches. This is mainly in my ribs, for example if I bend down to pick something up my ribs feel squashed and its sore. My back does get tired but I make sure I do a bit then rest.

I don't really want to ask my oncologist to increase my painkillers for this soreness as its not really pain if you know what I mean. What does everyone else do to manage aches and pains?

I only started treatment in March so hoping in time my aches may ease as the treatment kicks in.

Any advice appreciated.

I am on ribociclib, zoladex and letrozole.

X

Dx 3/5/2021, Left, Stage IV, metastasized to bone/liver/lungs, ER+/PR- Targeted Therapy 3/26/2021 Kisqali Hormonal Therapy 4/2/2021 Femara (letrozole), Zoladex (goserelin)
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Jun 5, 2021 08:01AM BevJen wrote:

Hamer,

Welcome. I see that you have got mets to your spine, ribs, and femur. I am in the same boat, plus I have liver mets.

I don't want to go through my whole recent story, but I would simply urge you to especially watch the femur issues. I was recently hospitalized bc doctors suspected an impending femur fracture on both hips, and had surgical procedures done on both. My immediately prior treatment was keytruda, but I had been on Ibrance and fulvestrant since mid 2019.

My onset with my femurs was similar to yours -- I don't know how the medical system works in the UK, but I'd suggest a consult with an oncological orthopedic doctor.

Good luck.


Microwave Ablations,Liver 3x ;Radiation Therapy to Femur (Both) April 2021; total hip replacement (R) and placement of rod (L) to stabilize femur both sides; immunotherapy (single agent - keytruda) Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Keytruda (pembrolizumab) Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Femara (letrozole) Radiation Therapy
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Jun 5, 2021 10:10AM Chicagoan wrote:

Hamer,

I also have extensive bone mets to the spine, ribs, pelvis and femur. Yoga has been very helpful for me to manage the soreness and to rebuild strength. If you MO approves, you might want to try a gentle yoga class. I would suggest Iyengar yoga since it is well established in Britain. I taught Iyengar yoga for many years and have made a few videos for people living with MBC, in case you want to try them. Start with Class 1 and then as you get stronger, move on to Class 2-again if your MO approves.


Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/26/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/26/2016 Ibrance (palbociclib)
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Jun 5, 2021 12:46PM Sunshine99 wrote:

Hamer, have you had any radiation yet? The few sessions of radiation GREATLY reduced my pain. Have you seen an ortho oncologist? Mine was concerned about my femur collapsing or breaking, but so far we've been ok with that.

I found it very helpful to see both the RO and the OO (radiation and ortho oncologists) to evaluate my situation. I'm not seeing either of them right now, as I'm fairly stable, but I'd go back to either of them in a heartbeat if and when there's progression.

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Jun 5, 2021 01:51PM NicoleRod wrote:

Has anyone had C or T spine mets radiated and the RO did not also use a Neurosurgeon ??? My RO is not consulting with a neuro doctor (to my knowledge) and I know (think, believe) Sadie mentioned her's did ?? Is that common??

Also does anyone have a good RO in the Virginia, DC or Maryland area?? I am always looking for 2nd and even 3rd opinions...

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Jun 5, 2021 02:06PM Sadiesservant wrote:

Hi Nicole. My RO did not consult with anyone else. My MO referred me back to my RO and we zapped the mets on the base of my skull and C-spine. Not sure why a neurosurgeon or neurologist would be necessary since we know what is causing the problem.

Dx 4/2001, IDC, Right, 1cm, Stage IIA, Grade 3, 1/10 nodes, ER+ Surgery 5/10/2001 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 6/7/2001 CEF Radiation Therapy 12/17/2001 Whole-breast: Breast Hormonal Therapy 12/20/2001 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/2/2007 Femara (letrozole) Hormonal Therapy 10/22/2007 Arimidex (anastrozole) Dx 1/3/2017, IDC, Right, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Chemotherapy 1/27/2017 Taxol (paclitaxel) Hormonal Therapy 3/28/2017 Arimidex (anastrozole) Targeted Therapy 4/20/2017 Ibrance (palbociclib) Dx 10/12/2017, IDC, Right, Stage IV, metastasized to other Chemotherapy 10/20/2017 Xeloda (capecitabine) Radiation Therapy 11/15/2017 External: Bone Hormonal Therapy 1/18/2018 Faslodex (fulvestrant) Radiation Therapy 8/2/2018 External: Bone Radiation Therapy 11/5/2018 External: Bone Targeted Therapy 10/9/2019 Verzenio Radiation Therapy 11/3/2020 External: Bone Dx 1/22/2021, IDC, Right, 1cm, Stage IV, metastasized to liver, Grade 2, ER+/PR+, HER2- Chemotherapy 2/4/2021 Xeloda (capecitabine) Chemotherapy 10/8/2021 Navelbine (vinorelbine) Chemotherapy 1/7/2022 Halaven (eribulin)
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Jun 5, 2021 02:26PM NicoleRod wrote:

Sadie...Interesting I could have sworn it was you that told me that...well *shrugs shoulders* lol ...it was someone...lol


Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Jun 5, 2021 03:02PM Jsniffs wrote:

Nicole - The first time I had a spine met, my RO had me meet with a neurosurgeon. This second time (treatment to happen in a few days), I believe my RO is consulting with the same neurosurgeon, but I haven't met with him directly. For me, it was helpful to have the neurosurgeon involved to be more proactive about possible complications in the future. Best of luck!

Original dx at 36 while pregnant. My daughter and family give me hope. You never know what you can get through until you have to. Dx 1/2016, IDC, Right, Stage IIIA, 7/39 nodes, ER+/PR+, HER2- (IHC) Dx 12/2018, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 1/15/2019 Femara (letrozole) Radiation Therapy 9/1/2019 External: Bone Dx 4/2021, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 5/31/2021 External: Bone Hormonal Therapy 6/15/2021 Faslodex (fulvestrant) Targeted Therapy 8/1/2021 Ibrance (palbociclib)
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Jun 5, 2021 03:29PM NicoleRod wrote:

J....where are you having radiation T or C spine?

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Jun 5, 2021 03:44PM Jsniffs wrote:

T spine (T11 and T12, original met was T10).

Original dx at 36 while pregnant. My daughter and family give me hope. You never know what you can get through until you have to. Dx 1/2016, IDC, Right, Stage IIIA, 7/39 nodes, ER+/PR+, HER2- (IHC) Dx 12/2018, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 1/15/2019 Femara (letrozole) Radiation Therapy 9/1/2019 External: Bone Dx 4/2021, IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- Radiation Therapy 5/31/2021 External: Bone Hormonal Therapy 6/15/2021 Faslodex (fulvestrant) Targeted Therapy 8/1/2021 Ibrance (palbociclib)
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Jun 5, 2021 03:49PM Chicagoan wrote:

Nicole,

When I had radiation to the Thoracic spine, my RO did not consult a neurosurgeon.

Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/26/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/26/2016 Ibrance (palbociclib)
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Jun 5, 2021 03:55PM Hamer1l wrote:

Hi Sunshine99

Thanks for replying. No I haven't yet had radiation, it was mentioned early on as a possibility but not been mentioned since.

When I was diagnosed they sent me for xrays on my legs as they wanted to check if I was OK to weight bear. I was told that I was OK.

I haven't yet been referred to an orthopaedic consultant Re my spine etc. Do you think I need to push for this?

At the moment my oncologist doesn't seem too bothered when I mention anything about my bones!

I have not really had any advice Re the spinal fractures either. When asked how much moving around should I be doing, I'm told "it's up to you, see how you feel". I have been pushing myself a little especially with walking but a little concerned with my spine, I've also lost about 3 inches in height.

Chicagoan - thanks for the yoga videos, I will definitely give these a try. I have a review with my oncologist on Tuesday next week so I will run it past him.

I will certainly be pushing him to refer me to orthopaedics!

Thanks everyone

Dx 3/5/2021, Left, Stage IV, metastasized to bone/liver/lungs, ER+/PR- Targeted Therapy 3/26/2021 Kisqali Hormonal Therapy 4/2/2021 Femara (letrozole), Zoladex (goserelin)
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Jun 5, 2021 10:15PM Nkb wrote:

Hamer- are you on a bone strengthening drug like Zometa or Xgeva?

I second the yoga recommendation- I think it is why I have little pain.

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+ Surgery 2/4/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/28/2012 AC + T (Taxol) Radiation Therapy 9/11/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, ILC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Targeted Therapy 6/1/2017 Ibrance (palbociclib) Targeted Therapy 3/13/2019 Afinitor (everolimus) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Chemotherapy 3/10/2020 Xeloda (capecitabine)
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Jun 5, 2021 10:21PM prairiesea wrote:

Hamer....welcome, and sorry to hear about your bone mets. I have some similar experience, which might be helpful....I started toward an MBC diagnosis with a vertebral fracture that was attributed to osteoporosis until a DEXA scan showed I didn't have that. However, in the meantime, I researched a lot of osteoporosis physiotherapy and movement suggestions and I still use those, as in the meantime I have developed 3 more fractures. I think it is important to see a spine doctor or orthopedic oncologist (I've seen both); the oncologist that treats my MBC does not feel confident making recommendations about how to deal with the fractures, just how to treat the cancer. From spine doctor, orthopedic oncologist and osteoporosis info I've learned to try my best not to bend my back forward at the waist, and certainly never to do so bearing any weight. I also get into bed lying down on my side and then log rolling over to my back. It hasn't been totally successful in preventing more fractures (my bone mets are very extensive) but the fractures I've had since the first awful one have been less severe. I am also going to have a consultation for kyphoplasty on the most recent one, though I'm not completely sold on this as some of my doctors suggests it has only a 50% chance of relieving pain. But that might be worth looking into, I decided to partly because I am also somewhat hunched now and have lost height, and I want to see if I can alleviate some of that so I'm not looking at the floor in five years, hoping I make it that long. I find the pain tolerable and don't take pain drugs except an occasional Lidocaine patch. It only gets bad if I overdo. I also want to try some of Chicagoan's yoga....though I'm hoping this doesn't involve back bending?

I also had radiation at the beginning of treatment, and, Nicole Red, no neurosurgeon assisted my RO. I do think the radiation helped some....there are days when I feel perfectly fine.

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Jun 6, 2021 04:13AM Hamer1l wrote:

Hi NKB

Yes I am on xgeva bone strengthener every 4 weeks. I have had two so far, third one due in two weeks. How long do they take to kick in?

prairiesea - yes I think my oncologist is the same. If I ask about my spine or the fractures he doesn't seem confident in answering. I appreciate his main focus is the cancer but I want to make sure I'm doing things right in terms of movement and rehab for my spine.

I do try and bend through my legs now rather than bend my back at the waist but things still feel tight when I bend so I need to be careful.

I have read about kyphoplasty as I too did some research on the spine etc. I am seeing my oncologist next Tues so I am going to ask to be referred

Thanks for sharing your info it certainly gives me a few things to look into.

X

Dx 3/5/2021, Left, Stage IV, metastasized to bone/liver/lungs, ER+/PR- Targeted Therapy 3/26/2021 Kisqali Hormonal Therapy 4/2/2021 Femara (letrozole), Zoladex (goserelin)
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Jun 6, 2021 12:23PM emac877 wrote:

Nicole, I had radiation to the Tspine for a met at T7. My MO referred me to a neurosurgeon only because my CT scan showed that there was also a compression fracture that caused the bones to encroach on the spinal cord. I consulted with him to make sure there was no spinal cord involvement.

Hamer1 - I had mets to the spine and right hip. My MO primarily is focused on the cancer and I consulted with an orthopedic surgeon to stabilize the hip from fracture. He put a rod in but after that I have had very little dealing with them. It seems any time that there is risk of fracture or questions about the bones by my MO the concern is deferred to orthopedics. Paracetamol I believe is the UK version of Norco in the US (tylenol and hydrocodone?). I take that at night when I am really painful. My primary pain control is Tylenol and ibuprofen. Partially because it can be hard to get prescriptions for opioid based medications where I'm at and also because it seems to be okay for pain control most of the time so I save the opioids for when I need extra relief. I also use heating pads a lot. In terms of trying to stay mobile and active I don't tolerate long distances walking. I have stuck to swimming at my local gym and doing light stretches and shorter walks as tolerated.

Dx 2/8/2018, IDC, Right, 2cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery 3/22/2018 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Chemotherapy 6/8/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/26/2018 Whole-breast: Breast, Chest wall Dx 12/4/2019, IDC, Stage IV, metastasized to bone Radiation Therapy 12/23/2019 External: Bone Surgery 12/31/2019 Hormonal Therapy 1/6/2020 Faslodex (fulvestrant) Targeted Therapy 1/7/2020 Verzenio Hormonal Therapy 12/9/2020 Aromasin (exemestane) Hormonal Therapy 6/23/2021 Faslodex (fulvestrant)
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Jun 6, 2021 03:12PM ChathamLady wrote:

My radiated Mets T7-9. RO definitely consulted with Nero surgeon to make sure my spine was stable


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Jun 6, 2021 05:36PM Deamo1 wrote:

I have mets to the spine. So far I have not had any pain. In my past before cancer, I had plenty of spinal problems (herniated discs) Lately I feel a slight zap of pain if I move the wrong way. It feels exactly like my disc is about to go out. Is this what mets feels like? Kind of worried.

Dx 6/18/2018, ILC, Right, 4cm, Grade 1, ER+/PR+, HER2- Surgery 7/5/2018 Mastectomy: Left, Right Dx DCIS, Left, <1cm, Stage 0, 0/2 nodes, ER+/PR+, HER2-
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Jun 6, 2021 07:07PM NicoleRod wrote:

Did anyone know Moomala?? She hasn't been on here since last Aug :(

Dx 12/14 Stage 0, Grade 3, ER+/PR, HER2- (FISH),Dx 04/19, Stage IV mets to bone/liver, Hormonal Therapy 04/19 - 10/19 Ibrance/let/faslodex 10/19 **TNBC AUG 2021 Dec 2019-May 2020 Xeloda Failed May-July 2020 - Doxil Failed Dx 12/19/2014, DCIS, Right, Stage 0, Grade 3, ER+/PR+, HER2- (FISH) Dx 2/5/2019, IDC, Right, Stage IIA, Grade 3, ER+/PR-, HER2- Dx 3/2019, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 4/28/2019 Surgery Chemotherapy Doxil (doxorubicin) Chemotherapy Xeloda (capecitabine) Radiation Therapy Surgery Mastectomy: Left, Right
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Jun 6, 2021 07:13PM Chicagoan wrote:

Prairiesea-Do you live close to Champaign-Urbana? If so, I would highly recommend the Yoga for Cancer class offered at the CU Iyengar Institute. The teacher is very skilled and you would get a lot of personal attention. What helped me with my spinal compressions/fractures was hanging from a sling to create more space-but you would need to do that under the guidance of an experienced teacher. I think my videos would be safe for you to try-we don't bend from the waist but we do extend the spine from the pelvis-extending to a wall to create space. Watch it first and see if you think it would be ok for you.

Maybe NKB and I are just fortunate but I do think yoga helps, if it is under the guidance of a skilled teacher. I have numerous healed spinal mets and a few healed compression fractures but have never needed to take any pain killers (yet) in my first five years of living with MBC.

Dx 9/21/2016, IDC, Left, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2- Radiation Therapy 9/26/2016 Hormonal Therapy 10/5/2016 Femara (letrozole) Targeted Therapy 10/26/2016 Ibrance (palbociclib)
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Jun 6, 2021 10:10PM cyathea wrote:

Does anyone who had radiation treatment have pulmonary fibrosis and/ or lung collapse? What do you do for the pain? Does it get better?


I had radiation on my right breast and my T11 spine. My recent CT noted fibrosis most likely due to treatment and my MRI noted bibasilar atelectasis changes in my lungs.


The good news is no new mets! But I’m feeling greedy for a better QOL. I’m tired of being tired and in pain

Dx 6/17/2019, DCIS/ILC, Right, 5cm, Stage IV, metastasized to bone, Grade 2, ER+/PR-, HER2+ (FISH) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 10/9/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 10/10/2019 Herceptin (trastuzumab) Surgery 3/18/2020 Lymph node removal: Left, Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 4/16/2020 Other Radiation Therapy 6/1/2020 3DCRT: Breast, Lymph nodes, Bone Hormonal Therapy 8/21/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Herceptin (trastuzumab)
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Jun 6, 2021 10:53PM prairiesea wrote:

Thank you Chicagoan, this is helpful. I will watch your videos before participating to see if I think I can follow along. And thanks for the reference to the CU Iyengar Yoga Institute Yoga for Cancer class....I am in geographical range for that and it sounds like a good option for me.

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Jun 7, 2021 02:41AM Nkb wrote:

Nicole- Yes, I knew Moomala - we took Afinitor at the same time- I wondered where she was and hope she is just taking a.break.

Dx 12/2011, ILC, Both breasts, 6cm+, Stage IIIC, Grade 2, 34/40 nodes, ER+/PR+ Surgery 2/4/2012 Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 2/28/2012 AC + T (Taxol) Radiation Therapy 9/11/2012 Hormonal Therapy 10/21/2012 Arimidex (anastrozole) Dx 5/2017, ILC, Stage IV, metastasized to bone, ER+/PR-, HER2- Hormonal Therapy 6/1/2017 Faslodex (fulvestrant) Targeted Therapy 6/1/2017 Ibrance (palbociclib) Targeted Therapy 3/13/2019 Afinitor (everolimus) Hormonal Therapy 3/13/2019 Aromasin (exemestane) Chemotherapy 3/10/2020 Xeloda (capecitabine)
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Jun 7, 2021 02:46AM Olma61 wrote:

Hi all, just want to share this very informative video about bone mets from Living Beyond Breast Cancer. A really thorough look at everything to do with bone mets and it is very recent. At the end she talks about possible new therapies, she’s very hopeful that the COVID MRNA vaccine technology will evolve into a therapy or vaccine for cancer.



10/30/2017 Xgeva for bone mets 5/31/2018 Taxol finished! "If one just keeps on walking, everything will be all right” - Kierkegaard Dx 8/3/2017, IDC, Right, 2cm, Stage IV, metastasized to bone, Grade 2, ER+/PR+, HER2+ (IHC) Targeted Therapy 10/28/2017 Perjeta (pertuzumab) Targeted Therapy 10/28/2017 Herceptin (trastuzumab) Chemotherapy 10/30/2017 Taxol (paclitaxel) Hormonal Therapy 5/14/2018 Arimidex (anastrozole) Radiation Therapy 5/30/2019 External: Bone
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Jun 7, 2021 11:54AM moth wrote:

Nicole, my RO didn't consult with neuro. I had rads to T11. I think it depends where in the vertebra the met is. If it's nowhere near the spinal cord, then I don't think neuro needs to be invovled. Mine was smack in the middle of the vertebral body. If you can't remember your bio, here's a good picture of a thoracic vertebra & the enervation. you can see though that it would really depend on where the met is.

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External: Chest wall Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Jun 7, 2021 02:46PM Snow-drop wrote:

Olma, it is informative indeed, interesting to know having an endocrinologist in. I was pushing to get an orthopedic opinion 1/5 years ago, but he was not much of help. Thanks for sharing.

Nicole, I saw neuro surgeon before I started radiation and seeing neuro oncologist quite regularly after vertebrae fractured/ radiation courses completed. I think Moth explained well, butif you have further questions, please ask.

De Novo stage IV Dx 9/2019, IDC, Left, 4cm, Stage IV, metastasized to bone/other, Grade 2, ER+/PR+, HER2- (IHC) Radiation Therapy External: Bone Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Zoladex (goserelin)

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